How Many Days?

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Living with a chronic illness has changed me.  Most of my life, I roamed my environment without giving my body much thought.  If I wanted to take a walk, I made arrangements to allow me the time to do so.  If I needed to go grocery shopping, then I did it.  If I wanted to take a shower, I got up and took one.  You get the picture.  I enjoyed “movement without thought.”  It is natural – for the able-bodied.

There are many like me: those who have been changed by a chronic condition.  It is a new time for us.  It is a time to mourn our loss and to weep over what might have been.  We experience a harsh reality.

Myotonic dystrophy is a demanding master that looms over me with a whip and a chain.  Only with permission am I able to move from one spot to another.  It requires me to reassess everything I do.  My assumptions are called out and shown to be false.  Yesterday, I could remove an outer coat.  Today, I assume I will be able to do the same action.  Only, now, I find that I cannot slide my arm out of my sleeve.

For those of you who have not had a similar experience, it is difficult to fathom the process.  How could you?  Even I cannot anticipate the changes occurring in my muscles.  One day I can open a shampoo bottle; the next day, I cannot.  Then, suddenly, a week later, I can open it again.  There is no rhythm, no pattern.  It feels arbitrary.  I am kept off balance.

Over the past seven years, I have lost the ability to take care of myself.  The number of things that I can no longer do has grown.  My heart still yearns to move without thought.  It would be pleasant to wash and fold a load of laundry.  Even more, I would love to be able to walk in the woods with my grandchildren.  These lost moments sit quietly in the recess of my mind.  They haunt me in my sleep.

It can be quite maddening – plans need to be conditional. Without notice, I find the need to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity needs to be taken into account. “Is it a good day for a shower? What else would I like to accomplish today?” I must find a way through the uncharted territory of my new life.

Underlying all this talk about movement hides the unspoken question: “How many days do I have before my “I can days” stop altogether?”  Muscular dystrophy does not care about my dreams or wishes.  Just like it robs me of movement, it is robbing me of time.  Just like there was a time to be born, there will be a time to die.

This question of how many days is not just for the terminally or chronically ill.  It is something that everyone should be asking themselves.

If you know someone who is struggling to live each day as it comes, take the time to reach out to them.  They need to know that their value is not in what they can do for you or for themselves.  Do not wait until they are prone and all their days of “can do” are gone.

If you are losing your “can do days,” mourn your loss, but find your joy, too.  There will be plenty of time for weeping.  Now is the time to heal and build relationships; remember to laugh at yourself and with others.

“There is a time for everything,
and a season for every activity under the heavens;
a time to be born and a time to die,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance” (Ecc. 3:1-4)

 

Who Is Disabled?

You can’t miss me.  My physical disability is obvious.  You may not know the reason, but it is impossible to miss the big, black mass in which I am seated.  Not alone in this world of having to navigate barriers of all kinds, I have a few friends who also roll around in chairs, and I know a few more who use rollers or canes.  When in public, we are challenged by stairs, gates, and doors.  If you are not physically challenged, you would be amazed at how many times we cannot go forward without asking for help.  Many times, we need the assistance of an able-bodied person to help us manage our environment.

Not all physical disabilities are readily apparent. In addition to those using wheelchairs, rollers, and canes, there is another group.  All around us are people who struggle every day with depression, anorexia, or autism.  They, too, need help to manage their daily lives.  It may not be a door that bars their way, but they encounter barriers to freedom.

Sadly, I have discovered a third group whose disabilities are more severe than either of the two mentioned above. Their illness is hidden and apparent.  They are concerned only with themselves.  With all the physical and emotional strive that is a constant companion for the other two groups, this third group is the most challenging to encounter.

Recently, some friends invited my husband and me out to dinner.  Even though it was a Tuesday night, everyone was out enjoying the warm weather.  Greeting us warmly, the hostess led us to our table, in the middle of the room.  Uggh.  In order for me to get to our table, we had to ask other patrons to get up, move their chair, and let me through.  Person after person rose, some congenially and some unpleasantly.  This is not uncommon.  By the time I arrived at the table, multiple apologies had been extended on my behalf.  Because I was sensitive to their reactions, I felt obligated to apologize that I was in a wheelchair and that they were inconvenienced.

Today, many people are aggravated.  Period.  I think that they live aggravated lives.  I am sure you have come across these barely-sociable characters.  They are the ones that push their way through, demand to be taken care of first, and are unsympathetic to the needs of others. Because there is no way I can avoid making my requests, I encounter a plethora of angry people.  I watch them.  Sometimes, they verbally complain about having to accommodate me.  Most of the time, they use their bodies to communicate clearly their annoyance. Since my physical disability trumps their needs, they are forced to comply with my request.

In recent years, teenagers have been given the opportunity to care for a mechanical baby.  It is a tool to educate our young people about responsibility.  I would love it if there were a program where adults were required to manage life in a wheelchair for a day.  How would they handle all the barriers that the mobility-challenged face every day?  Maybe then they would discover how difficult it is to ask someone to move, or open a door, or fetch something out of reach.

We have all probably felt unsympathetic to another’s plight.  Nevertheless, it does not
excuse the behavior.  If we do not make every effort to change our thoughts, to take them captive, we will continue a downward slope to inhumanity.  Living with a disability or engaging with someone who has a physical disability gives us the chance to learn empathy, sympathy, and patience.  As we encounter the socially-disabled individual, our response may not change them, but it can change us.
Are you disabled?  I may be physically disabled, but I am determined to live in a continued state of deepening faith and love.  First, by living a life that bears the fruit of the Spirit (love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control); and, second, by learning to love everyone with whom I engage.

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control.” (Gal. 5:22) 

“Love your enemies and pray for those who persecute you.” (Matt. 5:44)

Love your neighbor as yourself.” (Lev. 19:18)

 

Finding Enjoyment and Having Fun

 

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There you are, struggling with health issues.  Your body or your mind have betrayed you, and, now, you are a new creature, an injured bird that can no longer soar the skies. What can you do?  What do you do?

Finding ways to enjoy life is extremely difficult when there are barriers to your old ways of enjoyment.  If we can discover new interests and find new hobbies, we can redefine ourselves.  Taking hold of our thoughts and finding the determination to be somebody new is a possible change, not easy but possible. Where do you start?

I have put together some ideas on ways you can start to find a new passion.

  1. Make a list of what you feel you can no longer do.  What were your interests?  How did you spend your leisure time in the past?  For example, I have a friend who spent his free time creating beautiful art with calligraphy.  He was so involved that he belonged to a calligraphy group and went to conventions.  When he suffered a stroke and lost the use of the left side of his body and his peripheral vision, he still tried to create the precise pieces he did in the past.  It was frustrating for him.  His disability had robbed him of his creative expression.  All those years of practicing his art and perfecting his craft mocked him.
  2. Modify yourself.  Continuing with my friend’s story; after years of trying to continue to create the exacting lettering that is the core skill of calligraphy, he finally broke free of his mindset that kept telling him he had to follow rigid rules meant for the able-bodied.  This eureka moment of realizing that his lettering did not have to be perfect, that there was beauty in the imperfection; that his gift of expression was intact freed him to modify his vision of himself.  He is a pioneer.
  3. What if you can no longer partake in previous leisure activities?  Let’s say that you were a motorcycle enthusiast, but now, as a paraplegic, you can no longer ride.  Is it possible for you to list what you enjoyed the most about riding?  Can you go further and identify the emotions?  Is there a way for you to reconnect with those feelings in another way?  For example, does your local high school afford you the opportunity to host a public safety announcement on the pleasures and perils of motorcycle riding?  Could you start a group on how to maintain or repair motorcycles?  Maybe you could write about your experiences (past or present) and submit them to associations or bloggers.
  4. Recreate yourself.  As I slowly changed from an able-bodied person to a mobility-challenged person, I slowly changed the definition of me.  Just before I lost the ability to walk any significant distance, walking in the woods was a weekend retreat.  When I lived in California, almost every weekend, I would drive from the Bay Area to Yosemite.  Hiking the high trails above the treeline are some of my favorite memories of those years.  When I lived in Chicago, my husband and I would walk miles from one part of the city to the next.  To this day, I miss those walks.  What can I do about it?  Find a new pleasure.  Now, I write.  Over the years, many people would tell me that I should write.  They thought that I had something worth saying.  So, I decided to venture into the unknown and recreate myself.  I would not term myself as a writer, but I am someone who writes about my experiences and what matters to me.  I am an encourager.  Writing is my new avenue of expression.
  5. Have you found a new interest?  As I wrote about in a previous post (So Goes My Nutrition, So Goes My Health), my commitment to taking care of my body and nutrition, led to an interest in food.  I thoroughly enjoy researching recipes and modifying them; finding articles on what is happening to my body and how food plays a significant role; and talking to other people about what they have discovered.  Even though I cannot do the actual cooking, I take an active role in meal planning, grocery shopping, and food preparation.  My interest in food has helped me to maintain my weight (and, in fact, I am losing a few pounds) in spite of the time that I spend sitting.  I don’t spend calories walking and I cannot exercise effectively, but I can feed my body good, nutritious, and healthy food.
  6. Continue a previous hobby with the help of a friend.  About five years before I was diagnosed with myotonic dystrophy, I started to take drawing and painting classes at the Art Institute of Chicago.  This activity stemmed from a childhood interest that sat in the corner of my mind.  One day, my husband asked me if there was anything that I had ever wanted to do but never did.  Yes, there was.  I had always wanted to draw.  As a result, he encouraged me to attend art classes.  Without his encouragement, I would never have followed up on my childhood dream.  Now, painting has become strenuous, but I am blessed to have the assistance to get me settled in front of a canvas, my paints opened, my palate at my side, and my brushes before me.  I can only paint for an hour or two at a time these days, but I can paint.
  7. I know, I know, we have all heard it before.  Volunteer.  There must be something about which you feel passionate.  Not only does volunteering help those in need, but it help you, too.  Interacting with people in different social settings has a positive impact on your psychological wellbeing.  You may find that as you turn your focus outward, you will start to feel less stress and more joy.  One caution: make sure you volunteer in a position and a place that fits you.  There are abundant opportunities in your community.  Getting out of the house and away from tension-producing patterns of behavior will give your immune system a boost.

In summary, your disability has redefined you.  It is time to take back control of your life.  What you think has a direct impact on who you are.  Whether your disability is physical or psychological, you can break out of old patterns that no longer benefit you.  Give yourself the gift of a new you and find freedom and fun.

So Goes My Nutrition, So Goes My Health

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Recently, someone mentioned to me that I talk about food too much.  In fact, they think I am obsessive about it.  It is a funny feeling to be criticized for caring about nutrition and the effect it can have on your body.  I am still trying to figure out if it is true.  Am I obsessive about food?

When I was diagnosed with myotonic dystrophy (DM), I started to conduct research on my disease and what I could expect.  Since the cause of  DM is a mutation in my DNA, it has a wide-spread impact on my body.  In addition to weakening and wasting my hands, legs, and core muscles, the disease has and will continue to damage my heart and my lung muscles.  I have a high likelihood of becoming insulin resistant.  One of the scariest problems is that I have difficulty swallowing my food, and choke easily (even on water).

When I discovered that my muscles were being destroyed, I knew that I needed protein, that sugar was best to be avoided, and that I could help myself by being proactive.  I decided to make a difference in my experience.  The more I read, the more I learned that many diseases can be affected by consuming the right types of food.

My journey has taken me to a different level of awareness.  Some of what I learned, we all know.  The difference is that I decided to stop eating fatty or fried meals, refined sugar, and processed foods.  Simply put, I eat mostly organic, unprocessed foods.  Lately, I removed gluten from my diet.  The more that I take care of myself, the better I feel.

Just doing a cursory glance at food and disease, we can see a connection.  Diabetics need to watch their fat, sodium, carbs, and calories.  People with hypertension should avoid sodium, sugar, processed foods, coffee, and alcohol.  If you have a heart condition, you are advised to avoid sodium, processed meats, and refined sugar.  See the pattern?  Of course, many other physical ailments could benefit from a more balanced nutritional intake of foods.

So, knowing what I know, how could I continue to take in foods that are harmful or potentially harmful to my body?  Making the decision to take care of myself was a given.  If I can slow the disease process and improve my overall health, then I will do whatever I can.  The process to change lifelong habits takes time and commitment.  Finding recipes and new ways to prepare food has helped me to keep interested in making the changes.  Planning weekly meals helps to budget grocery bills, reduces waste (waist), and adds variety to my diet.

This past summer, my husband had a heart attack.  His recovery has been remarkable, and the cardiac rehab people were amazed at how quickly he was able to regain strength and lose weight.  A significant contribution to his recovery was his decision to move his dietary habits to align more closely with mine.  You all know the drill: reduce high-calorie foods, avoid refined sugar, limit sodium, and try to replace processed foods with unprocessed foods.  I am not a strict-adherent prophet calling out the warning to change your food choices because it does not work if you end up feeling as if you are on a diet.  It is a lifestyle change.  Listen to your body.

I modified my approach to food because it will (and has) a direct effect on my body.  Just like I changed by exercise pattern immediately upon diagnosis.  The doctors and healthcare professionals are human beings with their own agendas.  Some will take an interest in nutrition and some will not.  I had a nutritionist who provided me with a sample meal plan that included Saltine crackers for a snack every day.  It was at that moment that I knew I needed to take care of myself.

If I do talk about food too much, then so be it.  I plan on being around as long as possible, and what you eat can shorten your lifespan or lengthen it.  It’s your choice.

4 Ways Handicapped People Are Risk-Takers

Living in a wheelchair is risky business.  The able-bodied world holds danger at every corner and on every street.

Street-Danger-1Risk #1:  The Street Risk.  Mobility-challenged people are quite willing to acknowledge that the ADA has encouraged the implementation of friendlier access to public spaces and transportation.  However, in many cases, the practical application has failed to provide the intention of the law.  For example, curbs.  The curb in front of my building was modified to accommodate the requirement of the ADA but failed in its accommodation for the user.  Instead of having two ramps for each crosswalk, the developer saved money by making the ramp at the apex of the corner.  Because of this design, I am forced to leave the crosswalk and place my wheelchair (and me) in the path of oncoming cars.  You may ask me why I do not choose another way.  The answer:  the other way has an alleyway that does not have a curb cut at all.  So, I am forced to roll into the street.

Another time, I was happily rolling along on my way to the store when I found my way blocked.  Instead of a sidewalk, there was an orange cone in the middle of a gaping hole.  Turning around, I backtracked to the nearest corner.  TStreet-Danger-3o my dismay, the busy street had no pedestrian crosswalk to get to the other side.  Again, I was forced into the street.

The street risks are endless.  In addition to curbs and missing sidewalks, there is the all too common problem of cars sitting in the crosswalks or blocking sidewalks.

 

Pedestrian-DangerRisk #2:  I Might Run Into You, After All, Risk.  Most pedestrians are oblivious to the world around them and, especially, to the mobility-challenged.  Whenever a physically disabled individual ventures into the general public, they carry the burden for the general population.  For example, I live in an area where there is heavy foot traffic as well as street traffic.  Everyone is busy.  Everyone is oblivious.  I am amazed at how many people do not pay attention to their surroundings.  Because I am concerned about running into someone, I call out a warning.  “I am on your left.”  Many times, actually most of the time, it has no effect.  I am invisible, and my voice is unheard.

There is a real risk of an accident.  My electric wheelchair has no break.  I control my movemenPedestrian-Danger-2t with a joystick.  If I let go of the joystick, I roll to a stop.  It is a frightening experience to have someone walk in front of me.  There have been too many times where I cried out in fear of hitting them.  Their reactions fall into two general categories:  (1)  Oh, I didn’t know you were there; and (2) Watch what you’re doing!

 

Risk #3:  The Swinging Door Risk.  Public doors have the handicap symbol but do not have a handicap button.  Yep, it’s true.  The physically handicapped person has the following options:

  1. If you have the use of both arms and hands, try to open the door (before getting hit).  Now, attempting to open a door and operate a joystick at the same time is very tricky.  Doors usually open on the right; they swing open to the right; since I am right-handed, my wheelchair control is operated by my right hand.  Imagine this: I grab the door handle with my left hand while seated; then I pull the door to the right while rolling backward.  If I am successful, I am now behind the door to some extent, and I need to get around the door while holding it open.  It is an almost impossible task; or
  2. Sit and wait for an able-bodied individual to open the door for us.  This may sound as if it is an easy solution, but it is not.  Think:  snow, cold, rain, and appointments.

On a side note: One time, I was yelled at by the receptionist at my doctor’s office.  Their office door is frosted glass; they have no handicap button and no door bell.  I rolled up to the door and tried to open it and could not budge the heavy glass door.  So, I knocked.  No one responded.  So, again, I knocked a little harder.  Still, no response.  On my third try, I knocked harder.  This time, I got a response.  A receptionist swung the door open in a rush, looked at me, and said,  “You could have broken the glass!  Why didn’t you just come in?”

I looked at her in amazement and calmly said, “How?  Why don’t you have a handicap button?”

“Humph,” she replied and stomped away.  But, she did hold the door open for me first.

 

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#4:  The Hidden Dangers of Parking Lots.  Wheelchair-bound people are short.  Well, we are all different heights, but we sit below most individual’s peripheral vision.  As a result, knowing that we are already invisible to the general public, when in parking structures, we have to look for people getting into cars; watch for exhaust fumes; avoid being clipped as cars quickly pass us; and be on alert for backup lights.  There is no safe place in parking lots for us.  We are in constant danger of being hit by a car.

 

The above examples are just a taste of the risk involved for the mobility-challenged individual.  I am sure that you could make a list of four more risks.  We live in a risky world full of opportunities, challenges and struggles.  As we gamble to venture out, we are making ourselves seen and heard.

 

Thirteen Steps to One Lesson

 

Stewing, yep, I was stewing in a mixture of emotions.  Feeling frustrated, discouraged, ignored, discounted, slighted, perplexed, surprised, and pressured.  It was unexpected, but, then when would I expect to have no access to a public building in Chicago?

Sitting at the bottom of the stairs and looking at the problem, I was tempted to turn around and leave.  We were at a cathedral for the funeral service of a friend’s mother.  My friend was not expecting me, but I was concerned about her.  She loved her mother deeply, and I wanted to share in her loss.  How was I going to get up those stairs?

My husband (Dennis) and I had driven in from Michigan, in high winds causing whiteout conditions the day before, and spent the night in a hotel so that we would arrive on time without any hassles.  Yet, here we were facing a big one.

Of course, being handicapped meant no front door for me;  I had entered the building via a side door.  As Dennis opened the large, oak door and I rolled in, immediately, I saw the problem: a looming flight of steep stairs.

“This is the handicapped entrance?” I wondered.

Then, I saw the wheelchair lift to my left.  I rolled over, opened the door, and eased into the small space.  Looking for the key to start the lift, only then did I notice that it only went down to the basement.  There was a flight of stairs over my head.

I wondered, “Do they have an elevator somewhere else in the building?  Do I have to go down to get access to the elevator to go up to the sanctuary?”

Just then, a priest appeared out of nowhere.  “Will this lift take me to an elevator so that I can get to the main floor?” I asked.

“Oh, no,” he said as he pointed to a worn out chair lift on the other side of the entryway.  “The wheelchair lift only goes downstairs to a small chapel.  We only have the stair lift to get upstairs.”

Now, that was a problem.  “How will I be able to into the cathedral if I had to leave my wheelchair behind?”  I asked.

“We’ll carry the wheelchair up the stairs,” he said.

“The chair is over 350 pounds.”

“We will get you up the stairs and then carry the chair.”

“No, the chair is 350 pounds without me in it.”

“Well, we only have the stair lift,” the young priest replied.

So, I rolled over to the stair lift wondering what I was going to do once I got to the top of the stairs, if I got to the top of the stairs.

I lifted myself out of my wheelchair and swung around to sit on the stair lift.  As soon as I sat down, I started to fall.  I cried out in fear of hitting my face on the marble floor.

“Help! I’m falling! Help!  Help!”

Luckily, Dennis was right there and caught me as I slid down.

The seat was broken.  The whole front half of the seat was missing support.

“Hmm,” the priest said, “We will have to get the engineer to put a piece of board under the seat.”

“How am I going to get up the stairs?” I said perplexed at his lack of compassion and empathy.  He could only address how to solve the seat and not even address that I almost fell to the floor flat on my face?

“I don’t know,” he responded and walked away.

Yep, he walked away.

It was decision time.  Would I just leave?  I sure felt like leaving.  What a waste of energy and money to come this far just to turn around and leave, I thought.  What about my friend?  She just lost her mother.

Dennis suggested that I try to walk up the stairs.  He would be there to help lift me up.  Holding out his arms, he said, “Susan will want to see you.”

“Okay,” I told him.  “Let’s give it a try, but I am not sure about this.”

I scooched over to the stair railing.  My hands were too weak to hold onto the wooden handrail. So, I wrapped my arm over the handrail and in-between the wrought iron vertical slats.  I placed my left foot on the first stair, then after I was steady, Dennis (holding me at my waist), lifted me up as I raised my right leg.  Step by step, we followed the same pattern.

After several stairs, I started to pant.  Midway through, I needed to rest.  Finally, exhausted and out of breath, we reached the landing.  Now, the next problem that needed to be solved loomed before us.  How was I to get into the sanctuary and to the nearest pew?

“How far do I need to walk?”  I asked.

“About 100 feet,” came the reply.

By this time, a woman had stopped to help (others had passed us by without a word).  This kind stranger held me by my right arm and Dennis by my left.  Bent over, struggling with every step, spending all my energy, I eventually reached the pew and collapsed onto the wooden bench.

As I looked around, I discovered that I was 200 feet away from where everyone had gathered.  All that work only to be removed and isolated.

Trying to gather my thoughts and feelings, I asked God for help.  “What can I learn from this?”

Without delay, the answer came:  Sometimes, our path requires extraordinary effort.  Not everything will be easy even when the motives are pure.  Patience is born out of adversity and hope springs from courage.

 

 

The First Step of Encouragement

Living with a disability presents daily challenges. Not all of them are obvious.  In fact, most of the time, the trials are small, little aggravations that accumulate over time.  The over-arching experience will distill the personality of those in the midst of a struggle.  The distilling process will eventually leave us with a solution of vinegar or wine.  We have all met someone whose temperament is sour and others whose temperament is sweet.

Not all disabilities are of the physical world.  Many belong to the psychological, financial, or familial impairments.  For example, many people are suffering silently from depression or other forms of mental illness.  Everyone lives with a chronic condition.  We are all partners in our struggles.

Sometimes, a little fun, hope, and faith can lighten the load.  My goal is to engage you in a dialogue about all that matters to anyone living with a chronic condition.

I hope you find encouragement here.